In 2008, the state purchased a house in Guilderland with the goal of transforming it into a small group home.
The plan was for a handful of residents at O.D. Heck, an institution for the developmentally disabled in Niskayuna, to move into the house, having been deemed ready and able to live independently, with proper support.
But five years later, this transition has yet to occur.
Bridgit Burke, an attorney who represents three of the people selected to live in the house on Lillian Drive, said that last week she was informed there is no state funding for the project. Burke is director of Albany Law School’s Civil Rights & Disabilities Law Clinic, and her interactions with O.D. Heck go a long way toward explaining why she is skeptical of the state’s plan to reduce the number of disabled people living in institutions.
“Those three individuals have been waiting for placement for years,” Burke said. “At O.D. Heck, there are people who have been living there for extended periods of time, who their team has said are ready to move into the community. But it’s not happening.”
Like other advocates for the disabled, Burke supports the overall state goal to move people living in institutions to community-based settings. That is detailed by the New York State Office for People with Developmental Disabilities’ statewide comprehensive plan for 2012-16.
“I certainly think giving people the opportunity to get out of the institutions and living in the community is a step in the right direction,” Burke said. “But there’s a huge disconnect between the state’s talking points and what they’re actually implementing.”
A spokeswoman for disabilities office did not respond to questions from The Gazette.
A 1999 Supreme Court decision requires that the state move people with developmental disabilities into the community, if they are capable of living outside of an institutional setting. Known as the Olmstead decision, the ruling found that the unnecessary institutionalization of people violates the Americans with Disabilities Act, and that people should be allowed to live in integrated, community-based settings.
In his 2012 state of the state address, Gov. Andrew Cuomo announced that the state would develop a plan to guide the transition of people from institutional to community-based care, provide access to affordable and accessible housing and promote the employment of people with disabilities.
“We must erase stigmas and ensure that the rights of people with disabilities are fully recognized and fully protected,” the governor said.
Cliff Zucker, executive director of the Albany-based Disability Advocates, said that the state’s comprehensive plan was a good step.
“These facilities were supposed to be closed 20 years ago, and it never happened,” Zucker said. “We are encouraged by the state’s commitment to move people into the community, even though it has not happened as quickly as it should have.”
In the early 1990s, former Gov. Mario Cuomo called for the closure of all of the state’s institutions for the developmentally disabled by 2000. But statewide there are still nine facilities operating.
In a message at the beginning of the statewide comprehensive plan, disabilities Commissioner Courtney Burke writes, “System transformation is not easy and requires the help of people beyond the exceptional staff at OPWDD.” She says that “we have made significant progress and I look forward to our continued partnership in designing a service delivery system that is equitable, sustainable and accessible to New Yorkers with developmental disabilities and their families.”
An October progress report suggests that OPWDD has already made progress in moving people with developmental disabilities into the community.
According to the agency, between March 2012 and August 2012 the number of people living in institutions operated by the state decreased 9.5 percent, from 1,169 to 1,058.
The goal is for the state’s institutional capacity to total just 150, and “be considered a time-limited high intensity service,” according to the comprehensive plan. “While some individuals will continue to need intensive supports on an interim basis in campus-based settings, people can, should and do have the right to live and receive their supports and services in the most integrated community setting possible.”
Other goals outlined in the comprehensive plan include:
• Preventing institutionalization by helping people access community-based services.
• Creating an assessment process to determine the level of support individuals need.
• Increasing the number of disabled people who are employed and earning minimum wage.
• Developing housing for people with disabilities. A $1.8 million allocation from the governor’s Medicaid Redesign Team’s Supportive Housing Development Program will increase the number of affordable and accessible housing units for 180 individuals.
• Collaborating with state and local systems to address transportation barriers in rural, suburban and urban settings.
Advocates for the disabled questioned whether the state’s ambitious goals could be achieved at a time of fiscal belt-tightening. Cuomo’s proposed budget would have reduced the reimbursement rate for non-profit organizations that serve the developmentally disabled by 6 percent, or $120 million in state Medicaid funding. But on Friday majorities in the state Senate and Assembly agreed to restore the funding.
Susan Constantino, president of the Cerebral Palsy Associations of New York State, said the governor’s proposed budget cuts came on top of $350 million in cuts to programs for the developmentally disabled over the past several years.
“A lot of money has been taken out of the system,” Constantino said. She said that groups and agencies that serve the developmentally disabled have become more efficient as a result of the cuts, but that they are reaching their breaking point, and that a 6 percent cut might result in cuts to staff and salaries.
Kirk Lewis, executive director of the Schenectady ARC, said the cuts would have cost his organization about $1.6 million, and 40 positions as a result.
The Schenectady ARC runs group homes and programs that primarily serve the developmentally disabled. The organization would manage the Lillian Drive house, if and when it opens. Lewis said he was “reluctant to comment on something that’s in the works,” and suggested that if funding for agencies that serve the developmentally disabled is restored, the project will likely go forward
“In general, people living in places like O.D. Heck present serious challenges,” Lewis said. “If there are cuts, we’ll have to look really carefully at what we’re doing. Our ability to serve people in the community will be hampered if there are cuts.”
Another concern is that the comprehensive plan would move New York’s developmentally disabled population into managed care — health insurance plans that contract with health care providers and medical facilities.
Constantino called the shift to managed care “the elephant in the room.” People with developmental disabilities require long-term, constant care, while the goal of managed care is for people to get well, and need less care. “Our guys tend to need more care as they get older,” she said.
“People with developmental disabilities are expensive,” said Barbara Crosier, vice president of government relations for the Cerebral Palsy Associations of New York State. “They’re not going to get better or be cured, but there are services that can help them live quality lives.” She said she didn’t doubt that the state’s comprehensive plan was well intended. “I think they want to move people into less restrictive settings,” she said.
There are 48 people living at O.D. Heck Developmental Center in Niskayuna, and many have been there for decades, Bridgit Burke, the lawyer, said.
Though staff at the facility have assured Burke that each person living there would have the opportunity to go on meaningful outings twice a week, over the last three months residents have averaged just 4.41 trips a month.
“Many of our clients did not have two opportunities in a month,” she said. “In addition to the lack of quantity of outings, the quality is woefully inadequate. The outings are typically to a fast food establishment, very brief and not in a consistent location or time so that they could develop a meaningful relationship. No real work is done to build the person’s capacity to live in a community with proper supports. They are learning dependence, rather than the independence which would be required by the federal regulations.
Burke shared several anecdotes to illustrate why she questions whether the state is really capable of moving people into the community and helping them thrive.
She said that she represented a man who was scheduled to start a day program, and was told that he wouldn’t be able to do it because he didn’t know how to ride a bus. “They didn’t think about how he would get to the program,” she said, adding that staff knew that the man was scheduled to start a day program and should have taught him how to ride the bus in advance.
Burke also represented a blind man who became disoriented during certain types of outings, and said the staff struggled to come up with alternatives for him. “He had lived with them for decades, and they didn’t know him well enough to figure something out?” she asked. The man came from a religious family, and his sister recommended connecting him with a religious institution. “Instead they took him to a dance,” she said.
Burke said that OPWDD’s comprehensive plan doesn’t address the barriers that prevent the state’s facilities from doing a better job of moving people into the community.
“When it comes to implementation, they fail,” Burke said.
Advocate after tragedy
Glenmont resident Michael Carey, whose 13-year-old son Jonathan was killed by an O.D. Heck staff member in 2007, noted that the Olmstead decision was handed down 14 years ago, and suggested the state had been slow to develop a plan for responding to it.
“They’ve been [avoiding] their responsibility in this area,” he said.
Carey has become a harsh critic of OPWDD since Jonathan, who had autism, was asphyxiated and crushed to death by a health aide — revealed, in a 2011 New York Times report, to have been a high school dropout with a criminal conviction for selling marijuana. A jury found that the health aide, Edwin Tirado, had improperly restrained the boy during an outing in a van to Crossgates Mall, and was criminally responsible for his death.
After reading the state plan, Carey said he saw little evidence that the state was taking his primary concern — the health and safety of the people in its care — seriously.
“They still do not provide safe facilities that are free of abuse and neglect,” Carey said. “They’re not dealing with the underlying problem.” He said the state will point to the comprehensive plan to say “look at all the wonderful things we’re doing. They’ll use fancy terms and make it look like they’re doing all these things.”
The comprehensive plan says that “ensuring the health and safety of individuals with developmental disabilities is one of the highest priorities” of the state’s effort to reform the system of care for the developmentally disabled.
The plan lists accomplishments, such as centralizing oversight of serious incidents and allegations of abuse, and long-range goals, such as developing reports about agencies’ performance in protecting people from serious incidents and abuse. A new staff training curriculum, called Positive Relationships Offer More Opportunities to Everyone, has been implemented, and is designed to teach staff how to handle behavioral problems in a more positive way, and thus reduce the use of physical restraints.
In the October progress report, Commissioner Courtney Burke wrote, “My primary focus has been on health and safety reforms, fostering a positive environment and designing a better service system for the future.” She said that the agency is beginning to see results: “serious incidents are being reported in a timely manner, and allegations of abuse are down 15 percent compared to one year ago. We can now track 100 percent of incidents in real-time consistently and system-wide. The length of OPWDD investigations has decreased significantly, as has the average time that OPWDD staff are on paid administrative leave. Thanks to new policies, we also have more highly qualified staff working for OPWDD, and more recognition of the critical and important work that direct support professionals carry out every day.”
Carey said that he and his wife never wanted to send Jonathan to an institution, and that they had hoped the state would provide them with the assistance they needed to keep the boy at home. But that didn’t happen.
“A lot of families would genuinely prefer to keep their children at home,” Carey said. Though the state’s plan suggests that OPWDD is working to move people out of state-operated institutions, “I don’t see anything about assisting families so that [the developmentally disabled] can stay at home,” he said. “If the state really cared, they would do everything they could to assist families, for a fraction of the cost. And if families can’t care for their children at home, there should be safe group homes set up.”
A 2011 New York Times article found that New York’s institutions for the developmentally disabled spent two and a half times as much money, per resident, as thousands of smaller group homes, but were rife with problems: physical and psychological abuse, the hiring of unqualified staff and a failure to investigate cases of abuse and neglect. After learning of The Times investigation, Cuomo forced the OPWDD commissioner to resign, and appointed Courtney Burke, a policy expert from Albany’s Rockefeller College of Public Affairs & Policy, to the position.
The state and federal government pay about $5,000 a day, on average, for each individual living at its institutions for the developmentally disabled. This high rate of reimbursement has gotten the state into trouble. Last fall, a report from the House Committee on Oversight and Government Reform found that over the past two decades the federal government had made about $15 billion in Medicaid overpayments to the state’s centers for the developmentally disabled. As a result, the federal government drastically reduced its reimbursement rate for the developmentally disabled, leading Cuomo to propose the across-the-board spending cuts that advocates for the disabled were speaking out against last week.